Advocating for Care 

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Furthermore, rules and regulations are detailed and restrictive. Unless you know what to and not to do, it is easy to run afoul of their rules. The world of healthcare is a dangerous place for family caregivers and your family member if you are not well-versed in knowing how to be a patient advocate. When you see a family member’s care going as expected and fear for their safety, knowing how to speak up can make a difference in whether they suffer harm or receive the care they need. I have saved my husband’s life personally by speaking up on more than one occasion.

Staying at the Hospital

Being a caregiver in a hospital environment is different from being a visitor. Caregivers often stay overnight with patients. I once stayed with Lynn at the hospital without going home for a month without a break, getting an exchange of clothes and supplies from my family as needed. Living in a hospital is a different experience.

When you need to survive as a visitor in a room, it’s helpful if you’ve talked to others who have also had to camp out in a patient room before. Having done it often, I automatically know what to pack.

  • I store my soaps and shampoo products in bottles so I can wash them in public restrooms.
  • Non-perishable food and beverages in case I can’t go to the cafeteria to get meals.  
  • I keep my medications sorted in baggies, with each day kept separately.
  • Non-skid for foot protection and to decrease direct contact with the floor (think hospital germs on the floor—yuck)
  • A sleep mask and earplugs because hospitals never sleep.
  • Cell phone, charger, my computer or tablet, and their chargers, and a safety extension since you’ll be plugging into patient care plugs.
  • My pillow – the nursing unit will usually share unit linens with families but not disposable pillows due to the cost. Bring spare pillowcases for germ covering.

I bought a fold-up wagon to transport these items, plus what I need for Lynn to and from our room and an electric cooler to store food and drinks in the room. I take all the above plus my clothes just for me.

In addition, I pack a bag (or two) for Lynn. I’ve discovered several items at our local hospital that Lynn needs they don’t keep on hand. So, I bring those items with me. I keep a supply pre-labeled with his name and date of birth. He also uses special support pillows and other comfort products they don’t carry that I take with us. Each of them I also label with his identification. By the time I load our van to leave, it appears we’re moving in (or out).

Family Controls Medical Care

You and your family member make all final decisions regarding your family member’s health care — not the medical team; therefore, you need to understand the terminology and information you hear. You know your family member’s history better than anyone. You can tell if they respond well or poorly compared to how they did in the past. The healthcare team may not know how they did in the past. They need your information. Stand your ground if you believe you have vital information they need to hear. Make them listen. There is always a chain of command in hospitals. Use it if you feel that safety is an issue.

Key Player in Healthcare Team

As the caregiver, you are one of the most important members of the healthcare team. You may be the most important other than the patient because you are the only one who knows the entire story. You know what is going on from all sides – at home, at the hospital, at every doctor’s office, at every therapist’s office, and with the insurance companies. You also have a past medical history and know first-hand (because you experienced it) what treatments worked since the last visit with the doctor. In fact, you might know better than the patient at times because the patient may have been confused during part of recovery, currently, or not want to tell the doctor the truth.

MVP – Most Valuable Player

You are a wealth of knowledge. You may not realize how much you know, but you are invaluable to the healthcare team—often more so than they realize, which is why I want you to learn how to talk the talk with them so they will listen to you. One of your greatest challenges will be to get some of the doctors to respect you and see your value to them. That’s not true of all of them, but many will talk over you. Don’t let them. Correct them when they make assumptions or say things that are not true about your home situation. When they want to do something that will not work for your situation at home, speak up and say so. Ask questions and involve yourself in helping to make the decisions about your family member’s care.

Speak the Truth; They Need to Know

When my Mom had cancer, she was somewhat uncomfortable most of the time; however, every time I took her to see her Oncologist and the doctor asked her how she was doing, my Mom responded with a cheery, “I’m doing great and how are you?”

Why would she do that? She was obviously in pain. The answer was because she LOVED her doctor. She could not stand to disappoint her doctor by saying she felt terrible. The doctor understood my Mom and would instead ask me for details about her condition.

Clarify Misunderstandings

As the caregiver, sometimes, you must be the truth-teller. Patients sometimes need to live in denial for a while as they adjust to different stages of illness. Other times confusion or memory loss interferes with accurate storytelling requiring the caregiver to intervene. I often allow the one under my care to relay their story first, and then I supply details to clarify misinformation as needed. Occasionally the person under my care and I can’t entirely agree on the details. Usually, the doctor explores the differences in more depth to determine where the difference lies if knowing whose right matters.

Truth is Vital

It is vital to give healthcare providers pertinent information about changes occurring since the last visit. A change in behavior or primary body function can indicate something to a healthcare provider that a layperson would not consider. Intermittent events often serve as warning signs of something more serious about to happen. Caregivers need to give doctors the details to decide what is pertinent. Therefore, tell them everything.

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Healthcare to homecare provides information and resources to help new and experienced caregivers take on the role of healthcare provider at home.
Healthcare to homecare provides information and resources to help new and experienced caregivers take on the role of healthcare provider at home.
Caregivers of special needs children face many challenges and overwhelming emotions. Loss of dreams, fear of the future, and much more. They need someone who understands and doesn’t judge; someone who’s been there and gets it.
Caregivers of special needs children face many challenges and overwhelming emotions. Loss of dreams, fear of the future, and much more. They need someone who understands and doesn’t judge; someone who’s been there and gets it.
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